Deary project: Improving Patient Pathways for Persistent Physical Symptoms

[Esther12]

I've not seen any discussion of this here, but I was just looking through and it looked pretty odious.

When I was reading it I kept hearing Deary's voice saying the words... this was not a pleasant experience so I stopped! Thought I might share the joy though!

http://www.ahsn-nenc.org.uk/project/226/

 

[hixxy]

I dunno, but don't all uncured diseases have persistent symptoms?

 

[Esther12]

I dunno, but don't all uncured diseases have persistent symptoms?

They do get themselves in a bit of trouble here...

Persistent Physical Symptoms (PPS) is an umbrella term to cover conditions such as Chronic Fatigue Syndrome (CFS/ME), Fibromyalgia and Irritable Bowel Syndrome (IBS) where the symptoms people experience are not fully explained by pathology.

new.ahsn-nenc.org.uk/wp-content/uploads/sites/3/2014/12/ImpPatientPath-Case-Study-30-AUG-2016-FINAL.pdf

Symptoms are pretty difficult to fully explain via pathology. I'd have thought that loads of conditions (MS, Lupus, etc) have symptoms that cannot be fully explained by our current understanding of their pathology. But Deary means, you know, those troublesome patients... you know the sort... 'not fully explained by pathology' is the empowering and collaborative way of describing it.

 

[hixxy]

I think there are very few diseases where all symptoms are fully explained by pathology.

 

[Woolie]

I'm blown away by the sheer proliferation of names in this area. We had "medically unexplained symptoms", "somatic symtpoms disorder", "bodily distress syndrome" and now "persistent physical symptoms". The idea seems to be to keep it moving all the time, so people won't notice that you're just saying the same old thing (its psychological) and just changing the names.

The clues are in the "resource sheet":

Pain is usually a signal that there is something wrong, like an internal alarm, drawing our attention to a part of our body. However, pain can also be a “false alarm”. Like a car alarm going off in a high wind, or a burglar alarm being triggered by a cat. This pain is just as real as “harm” pain, but it doesn’t mean that there is something wrong.

Fatigue can also become a vicious circle: the more tired we are the less we do; the less we do, the more tired we get.

Actually, some of the material in the resource sheet is kind of good - you know, saying the symptoms are real. And many patients may feel enormous relief to be told this, even by a leaflet. But its still unsettling. Kind of like that nice friendly chat you had once with that evangelist... until you realised he was just laying the ground work so he could hit you with the really heavy doctrine.

 

[Woolie]

I think there are very few diseases where all symptoms are fully explained by pathology.

The BPS response to that is simple - all diseases have a "psychological" component. The symptoms that aren't fully explained, those are the psychological ones.

 

[Woolie]

Reading on... I see the horror of it all but for some reason I just can't look away...

The whole project is sold on the basis that people with "PPS" simply cost doctors too much time and resources, and we need to sort that out, get them out of our surgeries so we can deal with the really sick people:

It is estimated that the annual cost of PPS in England is almost £18 billion (including £3.1 billion direct costs to the NHS).

Evaluated and shared good practice: a case study was prepared highlighting the work one GP had
carried out reducing attendances for PPS from 30 a year to 6.

Oh, and there you have it, the elephant in the room:

There are five points on the PPS Pathway ....1) Early symptom presentation, 2) Providing symptom explanations, 3) Framing tests and referrals, 4) Introducing psychosocial factors, 5) Supporting people with established PPS.

 

[sarah darwins]

Oh, and there you have it, the elephant in the room:
Oh, and there you have it, the elephant in the room:
There are five points on the PPS Pathway ....1) Early symptom presentation, 2) Providing symptom explanations, 3) Framing tests and referrals, 4) Introducing psychosocial factors, 5) Supporting people with established PPS.

Bingo. Only this crowd can state that a condition has symptoms that aren't understood in one breath, then outline a program in which they explain those symptoms to the sufferer in the next. Impossible is nothing for Team Psychosocial.

 

[Sean]

2) Providing symptom explanations, 3) Framing tests and referrals, 4) Introducing psychosocial factors,

I am old enough to remember when that was called lying, and worse.

And what a nasty little dog whistle about the economic burden of such 'syndromes'. A particularly callous act of cowardice.

 

[Woolie]

I'm blown away by the sheer proliferation of names in this area. We had "medically unexplained symptoms", "somatic symtpoms disorder", "bodily distress syndrome" and now "persistent physical symptoms". The idea seems to be to keep it moving all the time, so people won't notice that you're just saying the same old thing (its psychological) and just changing the names.

Actually, thinking about it further, a lot of the name changes might be designed to increase the scope of the diagnosis, so that more and more patients will be able to meet it. In this project, they manage to claim that PPS applies to 20% of all patients!

This is part of the pitch too: "Look at the size of the problem, I bet you never knew just how big it was - and we're the ones to solve it for you!"

 

[Cheshire]

Actually, thinking about it further, a lot of the name changes might be designed to increase the scope of the diagnosis, so that more and more patients will be able to meet it. In this project, they manage to claim that PPS applies to 20% of all patients!

The desire that one's name will be set in stone can be a factor too.

Every team working in this field tries to promote its term, Fink and al., Bodily distress syndrome, Deary seems very proud of his "Persistant Physical Symptoms", I remember Chalder saying she prefered something like Medically Unexplained Persistant Physical Symptoms, Stone favors the word functional and so on...

 

[Woolie]

Every team working in this field tries to promote its term, Fink and al., Bodily distress syndrome, Deary seems very proud of his "Persistant Physical Symptoms", I remember Chalder saying she prefered something like Medically Unexplained Persistant Physical Symptoms, Stone favors the word functional and so on...

Its great eh - you can't rename MS or RA, how dull. But you can be so creative in this field, because anything goes!

 

[A.B.]

The BPS response to that is simple - all diseases have a "psychological" component. The symptoms that aren't fully explained, those are the psychological ones.

It defies logic to conclude that the unexplained is explained because it is unexplained.

 

[Jo Best]

I think they opted for PPS over MUS/MUPS as it's 'more positive'!

Medically Unexplained Symptoms/Functional Symptoms – Positive Practice Guide

6
2. Issues of terminology

2.1 Although the term MUS is commonly used in healthcare practice and academic articles it is unsatisfactory for a number of reasons. Foremost, it fails to engage patients in treatments as patients feel it invalidates their symptom experience and infers that their symptoms are 'all in the mind'6. In order to increase access to psychological therapies for this patient group it is crucial that our terminology is both accurate and acceptable to potential patients.
2.2 Other reasons cited for why we should not use the term MUS summarised in Creed et al.7 include:
2.2.1 It reinforces dualistic thinking and the idea that illness is either biological or psychological.

2.2.2 The term defines the illness by what it is not: i.e. it implies no organic cause which is not necessarily accurate and affords no treatment utility.

2.2.3 Research has shown that most patients want a positive description of symptoms i.e. an explanation of what it is rather than what is isn’t.

2.2.4 The term may appear dismissive and provides the message that nothing can be done. This is inaccurate as there are evidenced based approaches which show that methods such as CBT and graded exercise are effective treatments for these conditions.

2.2.5 Similar approaches also assist patients with well recognised medical conditions reduce the severity of symptoms and disability associated with the symptoms. Therefore the fact that psychological treatments works does not mean that the illness is psychological.

2.3 The IAPT MUS Task and Finish group strongly advises that when engaging or treating patients, the term MUS is not used. The experience of experts working in this field is that where possible patients should be given a specific diagnosis of a syndrome which describes their central symptom(s) without inferring that the aetiology is psychological. Common syndromes include:
- Fibromyalgia
- Irritable Bowel Syndrome
- Chronic Fatigue Syndrome
Source - (uploaded as pdf)

ETA - just saw this thread on the subject from 2014 - http://forums.phoenixrising.me/inde...tional-symptoms-postive-practice-guide.31581/

 

[Gijs]

So when physical symptoms are unexplainable by the doctors they are psychological, are these doctors really so stupid? Or is it intellectuel lazyness? Or is it political for saving medical costs? Wow, what a stupid people!

 

[alex3619]

So when physical symptoms are unexplainable by the doctors they are psychological, are these doctors really so stupid? Or is it intellectuel lazyness? Or is it political for saving medical costs? Wow, what a stupid people!

This is a fallacy they commit here. Its defined, and published, and I blogged on it. I would like to say if something is unexplained, its unexplained. You can either say "I don't know" or you can say "we need to investigate further" but you can't say, without being irrational, "it must be psychological".

There is also a formal psychogenic fallacy that is a bit different, to do with arguments, and not relevant here.

One of the defenses they try to use, in defending psychogenic/psychosomatic diagnoses, is that only 4% are ever rediagnosed. This is another crock. What they should have said is there is a study that shows this, the patients are only followed for a year (it can take decades for a proper diagnosis, and many decades if the test is not developed or available) and are in hospitals that don't run tests on psychogenic patients. After all, its expensive and there is nothing to find. Its a crock, as I already said. Complete BS.

The earliest defined disease I can find that they claimed this kind of thing for was Tuberculosis, and there are now probably hundreds of diseases, including every kind of cancer, for which this was claimed. Its a total failure in historical terms, but convenient to deny patient care.

 

[Valentijn]

The BPS response to that is simple - all diseases have a "psychological" component. The symptoms that aren't fully explained, those are the psychological ones.

And even more importantly (for the quacks) - CBT is consequently necessary for all patients with any biomedical disease

 

[alex3619]

And even more importantly (for the quacks) - CBT is consequently necessary for all patients with any biomedical disease

Another thing that really annoys me is that there are lots of people who genuinely need psychiatric help, yet this fiction will take resources away from those people. Sooner or later some government agency will keep records, and actually look at them, that show this is a colossal failure, and then psychiatry is likely to find itself with even less funding - this is a disaster for psychiatry, not just supposed and real psychiatric patients.

 

[Luther Blissett]

For a wider social context and use for these types of 'Treatments', these graphs I came across, I found interesting.

So, these treatments are being pushed at the same time as there is a growing need for an answer to what could become a bit of a political/social problem.

 

[Esther12]

Actually, some of the material in the resource sheet is kind of good - you know, saying the symptoms are real. And many patients may feel enormous relief to be told this, even by a leaflet. But its still unsettling. Kind of like that nice friendly chat you had once with that evangelist... until you realised he was just laying the ground work so he could hit you with the really heavy doctrine.

It does all seem so manipulative. A salesman saying what a lovely family you have is only going to make suckers feel good.